Global health meets genomics: inequalities and politics
Scientific advances in the understanding of genetics and genomics have the potential to generate major improvements for human health in the near future. However, from a global health perspective, the translation of this technology into new medical treatments raises profound international and local issues around inequality, identity and insecurity. On 18th July 2014, we attended an interdisciplinary one-day conference at the University of Sussex which brought together experts from various fields to examine the complexities around the issues of genetics, genomics and global health.
Keynote speaker Andrew Lakoff, Associate Professor of Anthropology, Sociology and Communication at the University of Southern California, presented a provocative juxtaposition between the new techniques of molecular biology (genetics and genomics) and global health: the world of genomics is currently largely geared towards the ageing population of the wealthy world, whereas global health focuses on the developing world, is underfunded and under the purview of development agencies. Lakoff presented what he described as two normative regimes within global health:
- Humanitarian biomedicine, which focuses on treating existing diseases afflicting populations in the developing world.
- Global health security, which prepares for the onset of potential future diseases that might afflict members of the advanced industrial world.
This week we have seen both regimes at play in the publicity and action around the unfolding Ebola crisis in West Africa. While governments and NGOs struggle to contain a devastating humanitarian disaster destroying lives and communities in Sierra Leone, Liberia and Guinea, British and North American policymakers and media highlight the security risks to their populations of the outbreak ‘going global’. The ironies and politics between these competing narratives around outbreaks and epidemics are highlighted in IDS work on Ebola, including in a recent IDS feature and in a blog for the Bulletin of the WHO, Time to put Ebola in Context.
Lakoff considered issues around genetics and genomics through the lens of these two regimes, showing how they raise ethical, political and economic challenges. First, the issue of viral sovereignty was raised during the avian flu (H5N1) crisis, when Indonesia refused to share genetic samples of the virus with the WHO based on grounds of equity for low- and middle-income countries. This action divided the global health arena - to some, it was undermining global health efforts and putting lives at risk; to others, it was a demonstration of a need for more transparent, equitable and fair virus sharing. As a result, the new WHO Pandemic Influenza Preparedness framework has acknowledged the principle of sovereignty.
A second example is the uncovering of hidden ties between global health agencies and pharmaceutical corporations, consisting of contractual agreements to secure national stocks of vaccines in preparation for the swine flu (H1N1 influenza) outbreak. Many developed countries ended up with a surfeit of medicines for H1N1 (e.g. the US only used half of their vaccine stock), and consequently tried to offload their surplus to developing countries. This case highlights that whilst spending on pandemic scenarios continues, often despite a weak evidence base, only lip service is paid to the great killers currently affecting global health.
As Lakoff argued, these cases indicate that harnessing scientific advances to address issues of global health involves challenges that are political and ethical, as much as technical. They also highlight the significance of inequalities in the intersections between genetics, genomics and global health.
These were the focus of a panel session that we chaired, ‘Closing the Gap in Health Inequalities – is Genomics Part of the Solution?’. Here, presentations from Audrey Duncanson of the Wellcome Trust, Michael Hopkins of SPRU, and Stuart Hogarth of Kings College London animated a lively debate.
From some angles, a ‘genomics revolution’ promises major benefits in the prevention, diagnosis and management of non-communicable diseases that have been hard to control, offering a new generation of personalised medicine, new tools and therapies. Some argue that there is great potential for their application in the developing world including Africa, as these diseases rise in significance relative to longstanding killers such as diarrhoea and pneumonia. Efforts to build genomics science and science capacity in Africa and other low income settings, attuned to their particular problems and genetic variants, are therefore urgently needed.
Yet an opposing perspective suggests that even in high income settings, genomic medicine has not lived up to its hype. It has yielded relatively few new therapies, while the big wins in treating non-communicable disease have generally come from established therapies applied in new ways, along with tried and tested public health approaches – such as the use of aspirin, statins and smoking cessation in dealing with cardio-vascular disorders. Genetic testing and molecular diagnostics may offer the biggest potential health wins, but high costs – supported by the business models and intellectual property regimes of the pharmaceutical industry – limit their use even in the Global North. For developing countries, they are usually prohibitive.
As a lively debate emphasised, currently genetic and genomic medicine is big on science, and promise, but small in impact. Translating science into workable technologies requires institutions and infrastructures, and these are often missing. As an expensive technology, benefits in terms of health outcomes are confined to a few. In this context, genomics is probably not increasing health inequalities as some have feared; its impact is not great enough for that. But it is not closing the gap either. Cheaper, more appropriate therapies and diagnostics might in the future bring health benefits to low income populations in Africa and beyond. But it is important not to let these directions of innovation – and the regimes, narratives and pathways that form around them – distract from others. Applying old, established technologies more widely through strengthened health systems and markets, public health measures such as improved sanitation and water supplies, and tackling broader socio-economic and political disparities, ultimately offer stronger prospects for reducing global health inequalities – and for meeting global health agendas driven by humanitarian as well as security concerns
- Human genome patents and developing countries
- S. Thambisetty / Commission on Intellectual Property Rights, 2002
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- Genomics knowledge and equity: a global public goods perspective of the patents system
- R.D. Smith; H. Thorsteinsdottir; A.S. Daar; E.R. Gold; P.A. Singer / Bulletin of the World Health Organization : the International Journal of Public Health, 2004
- This paper from the Bulletin of the World Health Organization looks at genomics, the comprehensive study of an organisms entire set of genes and their interaction, and its potential for improving global health. The authors asser...
- Genomics and world health
- World Health Organization, 2002
- In the coming decades, information generated by genomics will have major benefits for the prevention, diagnosis and management of many diseases which have been difficult or impossible to control. The purpose of this report is ...